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CMF Question

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Comments

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2006
    Congrats Mindy!!! so happy you are done.

    I have 4 more days of Cytoxan pills and I am done---so glad this part of journey is just about over. And today I am a 6 month bc survivior!! I start rads on Jan 12.

    Susan and Cheryl, hope all is well with you.

    Hugs and prayers,

    Candie
  • SCMartin
    SCMartin Member Posts: 112
    edited December 2006
    Candie, The big countdown is on for you! $ days of pills and one more IV? It's a great feeling when you have that last one. Radiation has been fine except for skin reactions. I have my 5 boosts next week and then done. I've been on Arimidex for a month now and so far, OK. I did not have any fatigue through rads which was good. Take care and you'll get through that last one just knowing that's it!
    Bayyore, you will be there ,too and we will be here for you through the rest of your treatments. Hang in there.
    Stay well everyone and lots of love and thoughts to all. Susan
  • dash
    dash Member Posts: 173
    edited December 2006
    Hi! How's everyone doing?
    I had my 3rd out of twelve infusions today and it was a typical looong day. It's a 2 hour ride to get there and it's always a very long wait once I am there. I left the house at 8am and got back about 4:30pm and I am just pooped! I did stop by to see my PS for about a half an hour. My onc said he and his partners can't in good conscience recommend any oncs nearer to me--my area has a bad but mostly deserved reputation with having bad docs and hospitals. They are worried in case I have a problem not about the treatments themselves. There is one place they highly recommend which is an hour closer to me but I would have a co-pay each time I go there instead of here where I just pay if I have to see my onc. My co-pay is $30( and I see the onc once a month) so it would double if I change oncology offices. Yet I would save on gas and tolls but not $30 worth. I like the place I go to but it is so far. I am not thrilled with switching or staying. I don't know....

    The other thing my red blood cell count dropped to 12 and that's why I have had lower stamina lately. He said if it drops to 11, I'll get some kind of shot. Is this normal for a red blood cell count to drop after the very first month? It took me by surprise and so I forgot to ask him that. I figured any problems wouldn't be for a few months. They assured me it's not as serious as a white cell drop but I'm still worried.
  • b445
    b445 Member Posts: 980
    edited December 2006
    Holly, Each of us react differently to the meds. But the docs will have you back as it sounds like they already do. I'm sorry it's a long commute for you. You do have to weigh all the ins and outs of moving closer.

    I had my port removed on the 21st, exactly one year after getting it. I'm luck that I get the guy who invented the Hickman Port as my Dr. for it. He is a really great guy.
    So I'm a bit sore and having a reaction to the tape but otherwise happy to move on.

    Speaking of I wanted to invite you all over to the Moving Beyond Cancer, Circle the Wagons thread. You will get such unbelievable support there for every stage you are at.

    Happy Holidays to you all!
  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2006
    Hi to all.
    I had my last treatment on Dec 13th--last Cytoxan pills on Dec. 19th. (yahoo!!!) I am still very tired tho. Most tired I have been thru all of the 12 treatments. My taste is coming back, thank goodness. I start rads on Jan 12th.
    Hope you are all doing well. Have a Happy and Healthy New Year!!!

    Hugs and prayers,
    Candie
  • Sue227
    Sue227 Member Posts: 45
    edited December 2006
    Congratulations Candie!!! I know you felt like it would never come, but here you are! The fatigue will last a while especially with rads starting. I still have some fatigue and I finished in Oct. The taste thing is great isn't it! It comes back pretty quickly. Take care and Happy New Year to all the CMF girls!
    Sue
  • SCMartin
    SCMartin Member Posts: 112
    edited December 2006
    Congratulations, Candie!! I am so happy for you. What a great way to start the New Year. Best of luck with rads-I only had local skin reactions and now 9 days after my last rad the skin is just tan but otherwise just fine.
    Happy New Year to all the CMF girls. May this year and many, many more to follow bring all of us good health. Susan
  • socallisa
    socallisa Member Posts: 10,184
    edited December 2006
    Candie..don't you just love it when you swallow the LAST pill!!Good for you and Congrats...
    Hugs, Lisa
  • b445
    b445 Member Posts: 980
    edited January 2007

    Bumping for the new CMFers

  • b445
    b445 Member Posts: 980
    edited January 2007
    Congrats Candie, you've made it!

    I hope we see all of you over in the Moving beyond Time to circle the wagon thread. We'd love to help you through easch day. There are so many there that just make it so much easier to get through each day. Just read the last page or so then jump in whenever you feel comfortable we are always welcoming more gals to the circle!
  • dash
    dash Member Posts: 173
    edited January 2007
    Well, I finished my 3rd and 4th infusions--still have 2 days of cytoxan to go but wow! the nausea was fierce this time around. I am finally starting to feel human again. What a way to spend the holidays--I have been sick since Christmas.
    Thanks for the heads up for the circle the wagon thread, Cheryl.
    Huge congrats Candie for finishing--best of luck with rads
  • b445
    b445 Member Posts: 980
    edited January 2007

    Holly, I hope you're feeling better this to shall pass. We're here for you

  • nosurrender
    nosurrender Member Posts: 737
    edited January 2007
    hi CMFers...
    I had the infusions, not the pill form. I must say it was cumulative and the fatigue really did catch up with me towards the end of the eight weeks.

    i was given an exerimental double dose treatment that they were doing on aggressive cancers that had not spread to the nodes. The test was to see if it would knock the cancer out of the park for good- but if it didn't, then I would still have the option of then going to A/C or FEC rather than a more aggressive mets drug.
    I don't know what the final conclusion was for the overall study- but I had a very aggressive tumor and was given very poor stats for prognosis and am er/per negative.
    Well, if anyone tells you or hints that CMF is the "light" chemo, or the chemo that doesn't work- please remember that it is still the Gold Standard for early stage, negative node cancers and it works!

    At least for me it did--- Over FIVE YEARS so far!!!

    Good luck CMFers! Remember it isn't forever!!!

    Love,g
  • b445
    b445 Member Posts: 980
    edited January 2007

    bumping

  • ritajean
    ritajean Member Posts: 4,042
    edited January 2007
    Hi ladies. I have tried to post 2 times in this thread and hopefully the third time is the charm. I need some input from you to help me make a decision.

    I was diagnosed with a 1.4 cm. IDC tumor in mid November. On Dec. 21st I had a lumpectomy. Margins were clear and 4 lymph nodes that were removed by the sentinel node procedure were also clear. Tumor was Stage 1, Grade 3. er- pr+ her2-.

    I saw my oncologist for the first time yesterday after surgery. He gave me 2 options. Since my tumor was pr + he said I was a candidate for hormone therapy and said I could do radiation + hormone therapy (probably ARimidex) for 5 years with no chemo. Option 2: CMF chemo for 6 IV infusions staged 3 weeks apart, radiation, and hormone therapy. When I asked how much the chemo would improve my survival and reoccurence rates, he said 5% and explained that it would save 1 of every 20 women. The other 19 women never needed it in the first place. He suggested that I try the chemo and if I got along O.K. with it, continue the regiment of treatments. If I didn't do well after a couple, we'd stop the treatments and go back to option 1 due to the very small % of benefit. I temporarily scheduled my first CMF treatment for Jan. 26th with the idea that it could be cancelled if I changed my mind. I know of nobody who has done the CMF. Although I know you can't make my decision for me, could you please give me some thoughts and input on this. Are the side affects worth the try at the extra survival percentage? Is there anybody out there who had to make a similar choice? What did you decide and how did it work out?

    Thanks for your thoughts and time.

    Rita
  • dash
    dash Member Posts: 173
    edited January 2007
    Rita, I was in a similar situation as you until my oncotype test came back and showed me that I needed the chemo because that extra 5% makes a big enough difference for my 10 year survival rate. I would try to get the oncotype testing done. My oncotype results were 26--def high enough to do it. I wasn't planning on chemo until the test came back so high. If it had been in the low teens or under I wouldn't be having it. It made all the difference--since I know I need it, it will make me stick with the program!

    I am getting CMF but different than the way you might be having it. One of the drugs is taken orally and I am doing it for 12 treatments. Next Friday I go for my 5th infusion.

    Best wishes!
  • ritajean
    ritajean Member Posts: 4,042
    edited January 2007
    Thanks for your input. I asked about the oncotype DX testing and he said it could be done but he was sure I would score in the gray area. The two strikes against me on this test are the grade 3 rating and the fact that my tumor was only pr+ instead of both er and pr +.

    Good luck on your next treatment. I sincerely appreciate your response.

    Rita
  • Sue227
    Sue227 Member Posts: 45
    edited January 2007
    Rita,
    I had a similar diagnosis, 1.6cm tumor, stage 1, grade 3, no nodes involved. My oncotype score was 19, the gray area. I had lumpectomy, mammosite and I had 4 other choices, 2 of which were chemo, CMF or AC. I picked CMF, 6 treatments, every 3 weeks. Because of my age, 48, my onc felt I needed to do something. I have finished my chemo and am now taking tamoxifen. This is a hard decision I know but I wanted to do whatever I could. There are no guarantees with any of this. I will tell you that CMF is very doable. Good luck and I'm sure you will hear from more of the CMFers.
    Sue
  • bwetzel400
    bwetzel400 Member Posts: 5
    edited January 2007
    Hi Rita.. wanted to step up as we have similar dx.. and these ladies on here are so wonderful and I want to follow that pattern and offer help as well. was in oct 1.2 cm tumor but I was er+ pr- her2- stage 1 and grade 2 I am 45 and am sure that is also why my onc wanted chemo as well.. I am doing the cmf all IV every 3 weeks. and as these ladies have said it is very doable.. I almost feel guilty because all I have really had is a horrible headache a few body aches and tired.. a little naseau after number 2 for a few days.. but I have had some other personal probs going on as well and have not been taking care of myself.. so yes this is a little easier and very doable so far for me. good luck to you and stay here for answers and support from some awsome people they will get you thru..
    my oncogenne dx was a 17 I was about as grey as you can get I think. the cut off I think is 17 and under low risk...
    brenda
  • RaeMN
    RaeMN Member Posts: 36
    edited January 2007
    Congrats to Candie.....good luck to all of the fellow CMFers. Last year this time I was just starting too. Can't believe it has been one year. You will MAKE IT. Just take one day at a time...keep on the boards for support and it will go by.....CMF is doable...you will knock this nasty disease. I went on 2 vacations during my treatments last year....and I was done in July.

    Hugs to you all and keep posting...it helps a lot. And also, take it easy during this time....the time will go by.

    Rae
    1.5 cm ILC, lumpectomy, clear nodes, stage 1, grade 2, radiation, tamoxifen.
  • dash
    dash Member Posts: 173
    edited January 2007

    bumping

  • bwetzel400
    bwetzel400 Member Posts: 5
    edited January 2007
    thanks for keeping it going.. how are you holley? any releif? you have 5 coming up correct?
    how this finds you feeling better
    brenda w
  • b445
    b445 Member Posts: 980
    edited January 2007
    It's been over a year now that i started this process. I was a 1.2cm triple neg sate 1 grade 3c clear margins and nodes. I did 21 out of 24 weekly cmf treatments. The cytoxene pill was daily the MF by iv weekly. It is doable. I also followed up with 6 weeks of rads.

    I just had my port removed exactly one year from it being put in.

    I'm glad to see that there are more of us out there to give support to those thinking about CMF. When I came on last year I didn't know anyone doing it.

    Keep up the support ladies you are all so great!
  • dash
    dash Member Posts: 173
    edited January 2007

    Well, my 5th treatment was the best yet. I took the nausea meds different and maybe that has helped. I took compazine the night and morning before. Still had the Emend and Aloxi and steroid at the oncologist's office on Friday. But onc suggested I take the Marinol with an Ativan on Saturday night before I even get nauseous and continue it as long as needed. When I wake up in the mornng, I've been taking a compazine and ativan, too. Yes, I have been sleeping most of the days but, heck, it's better than being nauseous! Today, I have the most nausea and that's because I didn't take anything but a compazine because I knew I had to drive my son places but still it's not too bad...Cross your fingers for me in hopes that this is the right combo for me to get through the next half of treatments. Yes, the next treatment is number 6---halfway!!!!!!!!!!

  • ritajean
    ritajean Member Posts: 4,042
    edited January 2007
    That's good news Holly! Let's hope you've discovered the magic combination. If it's worked once, it's bound to work again. Hang in there.
    Rita
  • b445
    b445 Member Posts: 980
    edited January 2007
    Yahoo Holly! It's a guessing game as to what is going to work I hope it continues to work for you.
    And congrats on being half way there!
  • RaeMN
    RaeMN Member Posts: 36
    edited January 2007
    Great news Holly....hope it continues.....Aloxi and ATIVAN are wonder drugs....good luck

    Rae
  • dash
    dash Member Posts: 173
    edited January 2007
    wooo--hooooo, I'm halfway!! Number 6 accomplished!! image <--- I just wish I had the energy to dance like that!! LOL
  • b445
    b445 Member Posts: 980
    edited January 2007
    Holly I wish I had that kind of energy too!
    Glad you've made it half way! Now you can really see the light at the end of the tunnel!
  • socallisa
    socallisa Member Posts: 10,184
    edited January 2007
    Way to go Holly!!
    Hugs, Lisa

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